Posted by Tortuga on March 03, 1999 at 01:00:42:
In Reply to: Whole new problem for CH patients ? posted by gary g on March 01, 1999 at 15:28:43:
I think this is always going to be a problem attributed
to any disease that has no apparent cure and that is frought with amiguous diagnostic
routines based, mostly from what I can tell, on the process of elimination. While CH symptoms appear
to be treatable to degree, from patient to patient, the disease appears to remain intact and rages
on, perhaps of its own accord in many cases, independent of all remedies attempted, where only coincidence is noted.
Aside from pain management, are there really any cases of CH cured by any any treatment, other than nerve obliteration?
Can we name one reliable diagnostic procedure that can identify CH sufferers from non-CH sufferers?
It sound to me like we still don't understand the basic mechanisms at hand, if they have even been identified.
If we don't know the answer to these questions, I don't think we should
break up the card-game just yet. I agree though, the problem you mention is real and needs to be
kept in reasonable check. How you actually do that, defines the dilemma. Do we actually know what CH is?
Regarding your discussion....take me as an example. I am onset headache since Novemeber 98,
I have two-sided orbital pain and major brain pain, I manifest all the classical symptoms of CH, plus more.
When I first read the paper posted hear, I thought finally this is making a little sense...
But my cycle kept building to 24 hrs of constant headache in some form, all the time everyday now.
All day long I have excruciating orbital burning stabbing pain that trades on & off with massive widespread cranial pain.
I have tried every medicine available. Little luck. The lithium benefit, my last viable drug option, is slowly losing ground.
The headache is relentless. It just won't quit. So I think a lot about this.
I have had $10,000 worth of diagnostics. They tell me I will live along time now, but with CH.
How do I test the idea of weather or not I have been diagnosed properly? Doesn't sound to me like I can test this hypothesis..
As an ignorant sufferer, I wish I knew what I had,
and if this burning stabbing pain in my eyes isn't CH,
and the litinay of other sensations that join to it isn't CH,
I still wish I knew what it was...not that knowing is going to actual rescue me from
this mess I have found ...I find it interesting (and in no way offending) that many
have written me over the last few months doubting I had CH. I would imagine because
my experience appears on the surface to be vastly different or not exactly the same as others.
Or my expereince reaches oddities we are unfamiliar with, like two sided constant orbital pains...and bad reactions to O2 therapy
Despite our ignorance and because of ignorance, I think we are still in the same boat together.
We don't know much, but we know our pain, and we simply can not judge others' pain well.
Even if they tell you that you got CH, does it really help you? Does the fact that you think you have CH actually
help you in some tangible way. I think likely a main benefit is to know that
there are others with you, and the problem is at least now being stated. Progress! There may not be other benefits.
If you split this all up, one day maybe you and I will part ways....
I will be glad that day to know that either you or I have learned something helpful about our afflictions.
The day that splitting becomes meaningful, I will pursue it. It should be required to be based upon well defined
information and data. Till then I beleive it may be unwise to split the CH world. We just don't seem to
know anything about it. Its like having a bad back...its more art when their is less science. In our case we
our doctors are still fingerpainting....(no offense intended Doc Greg)
Whatever this pain is in my head, it is quite real and my doctors are for all practical
purposes, stupified as to what to offer me next, and
I am getting the feeling I must now learn to cope with it too......
Chronic pain is a bitch, no way around it and thats life, I have been there before. But life is good.
I beleive for us in pain, we may learn that only from each other. We also may learn from each other one extremely
important thought, that others have it a lot worse. The latter gives me strength... to
know others have journeyed where I am now, and have walked away from it better people, and if not better, at least alive!
Like Arnold S. says "Its not a tumor"!
God bless ya all. Continue to take all travelers, welcome all pain and suffering that may be CH.